Special Book Sale

Dear Readers,

We are interrupting our three part series on hallucinations to share a great offer with you. The second blog in that series will be here next week. But right now we want to offer you something to read while you self-isolate and take care of yourselves and your loved ones and so we are giving you our Award Winning Caregiver's Guide for FREE when you buy the bundle at a lower price than we've ever offered. We hope it helps a little.

Jim and Helen Whitworth

A LIMITED TIME OFFER!

All FOUR of our LBD-related books at the
LOWEST PRICE EVER!

  Award Winning Caregivers Guide
Managing Cognitive Issues
Responsive Dementia Care
Lewy Body Dementia Manual for Staff

This is a $85.70 value for a special price of $59.00

THAT'S A $26.70 SAVINGS!

BUY

For more information about Lewy body disorders, read our books:

A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Hallucinations, Pt. 1: What Are They?

Last week's blog was about understanding and managing fluctuations, from a presentation by a mentor of ours, Tanis Ferman, of the Jackson Florida branch of the Mayo Clinic. This next series of blogs are about the other part of her presentation at the 2019 IDLB Conference, understanding and managing hallucinations. I've added some information of our own as we go along too.

Visual hallucinations (VH), or perceived images of people, animals, objects occur in 60-75% of LBD. These images tend to be quite vivid and real appearing. Early in the disease journey, a person can often accept feedback from a care partner that the images aren't real. This is very common in late PD.

At one PD group Fred told us he saw "Little army men." He knew they weren't real because his wife didn't see them. "But, he said, they are fascinating. I enjoy them." However, as Fred's disease progresses and he loses the abstract thinking ability to compare, he must accept only what his own brain tells him. Then his little army men will be real to him.

That's when delusions (false beliefs) related to the image become common. These often become very involved. A friend of our told of her husband, Bill, who "saw" wolves in the back of their pickup and had many stories about their lives there. As with Bill, the hallucination happens and then the brain spins a story to make sense of it--to him if not to anyone else!

Auditory hallucinations are less common, occuring in about 30% of those living with LBD. These include sounds such as a doorbell, phone ring, music or muffled conversations.
Presence hallucinations are the feeling that somebody is present but just out of sight, behind or to the side perhaps. These occur but are even less common than auditory hallucinations.

Visual misperceptions (illusions) are very common in LBD. This is where an object is mistaken for something else. While these can contribute to delusions, they may also be easier to debunk. For example, a person may be able to accept that the dog they saw on the sofa was really a wadded up blanket that looked like a dog if they can touch it and shake the blanket out.

Visual misidentifications are where a person sees a person, object or location and identifies it as a duplicate or imposter. When the misidentification involves a person, usually someone close to the person, it is called Capgras syndrome. Recent research has found that Capgras is a visual dysfunction. If your loved one believes you are a look-alike imposter, try going out of the room and start talking before you come back into his sight. He will hear your voice and identify it as yours. Then when you enter, you are who he expects to see and who he does "see."

These visual symptoms all occur due to neuron loss in the areas of the brain that control sensory, especially visual, perception. They may also be partially due to an intrusion of dream sleep into wakefulness. Dan, a support group member tells about his deceased wife, Anita. She used wake up thinking someone was ringing the doorbell. Dan would dutifully get up and answer the door but no one was ever there.

Anita started out dreaming about the doorbell. The "sound" woke her up and became an auditory hallucination. Since Anita's thinking ability was diminished she believed the doorbells were real.
Insight, or the ability to tell the difference between reality and hallucinations, is affected when the thinking centers of the brain and their connections to the visual centers begin to fail.

Many hallucinations don't need management at all. If they are not distressing your loved one or making you unsafe, let them be. However, your loved one's reaction to their hallucination can often be stressful, to them or to you or most likely both of you.

Hallucinations can trigger delusional accusations or paranoid worries fostered by negative emotions such as ongoing fears such as a fear of abandonment or loss. In addition, any negative response is apt to be catastrophic, since the dementia-damaged brain doesn't do levels of intensity. Emotions tend to be either very intense or absent.

Next week's blog addresses some ways to manage these more difficult events.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Understanding and Managing Fluctuations

This blog is based on a 2019 IDLBC presentation about fluctuations. This week's is by Tanis Ferman PhD, who is based at the Mayo Clinic in Jacksonville, Florida. Tanis is a pioneer in the work with LBD and one of our mentors.

Our bodies all have natural cycles of fluctuation in sleep, appetite, body temperature, hormone controls, alertness and blood pressure.

The fluctuations related to Lewy body diseases are different. They don't necessarily have a regular cycle or rhythm. They affect cognition but they can also affect motor function, communication and even behaviors. These fluctuations are not natural. They are caused by the loss of

• dopamine, important for movement, attention and reward centers
• acetylcholine, important for cognition, wakefulness and attention.

These fluctuations are not due to, but may be worsened by:

• age, dementia severity
• delirium (infection, dehydration, intoxication or withdrawal, metabolic issues)
• medical conditions, neurologic conditions (stroke, seizures)
• sleep issues, alcohol use, pain, discomfort
• mood, catastrophic emotional reactions
• medication side effects, including but not limited to:
• anticholinergic agents,
• dopamine agonists,
• sedating medicines,
• opiates,
• oral steroids

Care partners talk about the "Good Times" and the "Bad Times." Loved ones may fluctuate between these two poles several times a day. They start out with mostly Good Times and occasional short bouts of "Bad Times." Eventually this changes to the opposite, with mostly Bad Times and occasional Good Times.  During the Bad Times, a person is drowsy, zoned out and unaware. They are easily distracted, tend to use words out of context if they can communicate at all, and find performing tasks difficult or impossible.  During the Good Times, a person is awake, lucid, and aware. They are able to focus (pay attention), can communicate better and can perform tasks more easily.  Managing fluctuations involves:

• accepting them as a part of the LBD disease. Accepting allows you to let go of negative emotions that can make the symptoms worse and last longer.
• looking for patterns so that you can adjust activities to fit your loved one's more aware parts of the day. When is your loved one's most alert time of the day? That might be the best time to plan personal care. When is the time of the day when Bad Times are more likely to appear? That might be a good time to schedule naps.

Thank you, Tanis. Next week's blog will be a review of Showtime, which is probably the most difficult to deal with kind of cognitive fluctuation.

For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia Managing Cognitive Issues in Parkinson's and Lewy Body Dementia Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Love & Sex, Pt 5: Spouses and Adult Children

This is the last in a series of blogs about dementia, love and sex. Past blogs have addressed the changes dementia and dementia caring makes in relationships, the changes it causes to a loved one's brain and feelings.

When you are aware of the changes that dementia causes, it is easier to accept these behaviors as a part of the disease and then move on to find ways to prevent or avoid unwanted behavior. That's what last week's blog was about. However, it is likely that you may still have to deal some. This week we discuss how sposues and adult children can use Responsive Dementia Care's last three As to deal with these behaviors when they occur.

Attitude. Developing the right attitude goes a long way towards more helpful actions.

• Empathy will allow you to see the issue from their viewpoint. This is the only one that counts, since only you can change. (See previous blogs about this.)
• Accepting your loved one's views and needs will prevent negative feelings from interfering. As long as strong negative emotions are present, your loved one can't "hear" you emotionally and will not respond positively.

Action. You are the only one who can chose how to act. You loved one can't. However they can mirror your actions, and follow your lead--if they are calm enough to "hear" you. Your goal is to behave in a way that calms your loved one and allows you to access their attention enough to refocus it onto something more acceptable.

• Last week's blog recommended that you proved plenty of emotional support throughout the day. This continues to be one of the most important things you can do.
• Gently reject an inappropriate approach by putting it off. A spouse might smile and even touch gently, but then say firmly, "Not now, dear" and move away. Alice said that when her husband was amorous during the day, she'd smile and tell him, "as soon as I finish this." Then she made sure her task lasted long enough for him to forget his request.
• Other spouses recommend cuddling, which even they can enjoy.

For the adult child, the issue is more difficult and embarrassing. Here are some suggestions. Of course, these can also work with spouses:

• Simply ignore the sexual aspect of an advance and respond in a friendly way with something distracting. (Don't worry about this bringing on more episodes. Unlike a child, a person living with dementia doesn't learn.) Most of these advances involve a need for attention. When you give this but don't reward the sexual message, the inappropriate behavior often decreases.
• If the behavior continues, shake your head, frown and move away if you can. Your nonverbal cues will be more helpful than your words. Remember the directions from last week to avoid anger, defending or explaining, all of which will make the situation worse.
• Move your loved one to a different location. This takes them away from whatever was triggering the behavior.

Averting: Refocusing your loved one's attention by moving the action away from the unwelcome behavior and towards something more acceptable. Such distractions work because dementia makes it difficult to think about more than one thing at a time but ONLY if you have validated your loved one's feelings enough to get their attention. If they are still strongly focused on what they want, your efforts will fail.

• Suggest going for a walk. Exercise can reduce sexual urges.
• Offer a massage of hand, feet or even back. Therapies that involve physical contact can divert the person's attention away from more sexual thoughts.
• Other distractions are sweets (always helpful!) and other things the person enjoys such as card game, photo sorting and viewing or even something you "need help with" like setting the table.

Finally, remember nothing works for everyone. You will likely have to try a variety of things to find out what works best with your loved one. Feel free to share what you've learned in the comments below.

Next week is about cognitive fluctuations, a subject discussed at the 2019 National DLB Conference by LBD expert, Tanis Ferman.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Love & Sex, Pt. 4, Preventing and Avoiding the Behaviors

Last week's blog was about unwanted touching. This week's blog describes some dementia-related changes and offers some suggestions for limiting the resulting behaviors. Last week we introduced Stan, a man with early dementia. What he wrote bears repeating in this blog:

"Despite being 77 years old, I find myself having a great many sexual thoughts and feelings. Fortunately, these things have only been in my mind. None of this is at all characteristic of my personality. I attribute this to the changes taking place in my brain."

Stan is right about the changes in his brain. So far, he has been able to avoid acting on his thoughts but as his dementia advances, this will likely change. Dementia damages some areas of his brain less than others. One of these more functional areas is where he stores forbidden words and thoughts. Thus, Stan is beginning to think more inappropriately.

• His sensory abilities will continue to function as cognitive abilities decrease, making such feel-good activities as sex more attractive.
• His impulsiveness will increases, so that he will act upon his thoughts without stopping to consider their social acceptability.
• As illness increases Stan's feelings of inadequacy and insecurity, sex may be the way he tries to maintain his self-esteem.
• As dependence increases, it will foster a clinginess that makes sex even less attractive to his already overburdened care partner.
• As his empathy fades, he will have little understanding of why his spouse rejects once welcome overtures, why his adult child is repulsed by such behaviors or why friends are offended by crude words.
• The autonomic nervous system which controls a his sexual organs weakens. Thus, even though Stan may act out his sexual thoughts with words and touching, he may not be able to function sexually--adding more feelings of inadequacy and possible jealousy.

So, how can care partners deal this? Last week's blog contained a short explanation of the 6 As, awareness, arrangements, avoidance, attitude, action, and averting. This week, we will discuss the first two: Awareness and Avoidance.

Awareness. The first blogs in this series have mainly been about awareness of how the dementia brain functions. Becoming aware of these changes helps you to develop helpful attitudes, which we'll talk about next week. But it also helps you to develop ways to prevent the behavior from happening.

Arrangements. By thinking ahead and making preparations, you prevent some behaviors from happening at all. Mainly this is identifying triggers and finding ways to avoid, change or respond to them

• Boredom can be decreased with a fidget blanket or regular chores. Amanda reported, "I guess Dad was using sex to alleviate boredom. When I gave him a task, like a basket of clothes to fold and refold, he's happier and doesn't bug me with inappropriate touching." The chores also make him feel helpful and relieves feelings of inadequacy.
• A need to touch may be satisfied by a stuffed animal or doll. My mother had a stuffed animal she carried with her everywhere.
• Feelings of inadequacy, insecurity and fear of loss can be alleviated with ongoing emotional support throughout the day. Diane stated: "Once I was more aware of Dick's emotional needs, I found it more important and easier to show care, compassion and conviction that I would be there for him always. That way, his anxiety levels drop and he is less afraid when I'm not there every moment."

You can do some other preparation too:

• For friends, neighbors and other family members, make sure they know about your loved one's dementia and the way it can remove inhibitions. Remember, your loved one can and often will do Showtime around other people, which can mask the dementia.
• For strangers, consider making up a card that you can hand out as an apology. It can say something like "Please excuse my loved one. She/he has a brain disorder that increases sexual thoughts and decreases inhibitions."

Avoidance. Avoidance is not avoiding the possibility that these unwanted behaviors can occur. Rather, it is learning to avoiding those behaviors of your own that trigger your loved one's unwanted behavior.

• Avoid attitudes and actions that trigger negativity. Love ones tend to respond to anger with more anger, to see defending as downright lying, and to find explaining belittling. Avoid words and that don't match your actions. They will believe the actions.
• Avoid mixed messages, such as words and actions that don't match. Maintain continuity. Avoid allowing something for even a short while one time and forbidding it the next.
• Avoid nonverbal cues that might inadvertently encourage the behavior. You want your loved one to feel cared for and appreciated, but non-spouses especially will not want their touching to convey sexuality. Even spouses will not want to trigger a sexual response at the wrong time. This can be tricky because touching itself is so beneficial. In fact,  regular loving touch actually tends to decrease rather than increase the likelihood of inappropriate sexual behavior especially when the behavior is an expression of neediness.

Next week's blog will be suggestions for how a spouse or an adult child can deflect unwanted sexual approaches when they occur and do it in ways that cause the least stress for both parties.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Love & Sex, Pt. 3: Inappropriate Touching

Last week's blog was on the value of touch. However, not all touch is welcome. Sexual touching is a good example of this. Making love can be a very important part of a couple's relationship, even quite late in life. When dementia changes the relationship to one that's more nurse/patient relationship this can change.

For the spousal care partner, romance is often weaken by a combination of tiredness and normal dementia care jobs like helping a loved one dress or get to the toilet. Jobs like cleaning up smell messes definitely don't help, nor do the personality changes that often occur with dementia. Care partners find themselves caught between wanting their loved one to feel like the person they once were and their own growing feelings of distaste towards what used to be pleasant sexual contact.

When the care partner is the loved one's adult child, even custodial touching can feel awkward. While a spouse might be comfortable providing intimate care for their loved one, doing the same for a parent isn't so easy for either person. In this case, the metamorphous into a nurse/patient relationship may be a welcome change that reduces uncomfortable feelings of embarrassment.

For the person living with dementia, the change is more drastic. First, they may still perceive their relationship with their caregiver as the way it used to be, not the patient/nurse one the care partner experiences. However, we have certain social expectations concerning sex, and dementia can erode a person's recognition of these and their importance.

Stan, a man with early dementia wrote: "I find that more crude language comes to mind than ever before. Also, despite being 77 years old, I find myself having a great many sexual thoughts and feelings. Fortunately, these things have only been in my mind. None of this is at all characteristic of my personality. I attribute this to the changes taking place in my brain."

Stan's description of his thought processes is a unique look at evidence of the type of brain changes that eventually lead to inappropriate behaviors. We seldom see the behaviors themselves until the disease had eroded the person's perceived need for restraint. However, thoughts like Stan's are definitely symptoms of the disease. Sadly, this increased sexual interest tends to occur at the same time that care partners are getting more turned off. More sexually aware and needy but with little or no inhibition, the loved one acts out these feelings--anywhere, anytime with anyone.

But it isn't just brain changes. As a person begins to feel less independent, attractive, functional or adequate, they may turn to sex for proof of their value. With appropriateness out the window, sexual advances at any time of the day or any place can be expected. In fact, the advances are most likely when the care partner is most busy, especially if the job doesn't directly include the loved one.

All is not hopeless. Using Responsive Dementia Care, you can deal with these behaviors.

• Awareness: Understanding dementia's effects on your loved one's brain.
• Arrangements: Preparations that prevent unwanted behaviors.
• Avoidance: Avoiding attitudes and actions that increase negative emotions, confusion and unwanted behaviors.
• Attitude: Using acceptance and empathy to see the issue from their viewpoint.
• Action: Acting to give them the emotional support they need.
• Averting: Turning aside the unwanted behavior and using distraction to refocus the loved one's attention to something more acceptable.

OK, this doesn't really tell you enough, does it? But next week's blog will be about preventing and avoiding unwelcome sexual advances.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Love & Sex, Pt. 2: Loving Touch

Happy Valentine's Day. Give yourself and someone else a hug for us today!

Last week's blog was about love and dementia. This week's blog continues that discussion. Years ago, we had a "touch but don't look" culture, where it wasn't unusual for a whole household to sleep in a single bed but one's body was hidden from neck to toes under layers of clothing. Now, our American culture has changed to "look but don't touch," where people's bodies are more exposed but there is much less touching. Even so, we humans are herd animals. That is, we thrive in groups and decline when isolated. We all need to be touched.

As we age, we tend to experience touching less and less. If you were raised as I was, in a non- demonstrative family, touching can become almost non-existent unless you make a conscious effort to change that. This is also the case if you live alone. However, you can change this. You CAN make that conscious effort and start touching more.

In a care facility, loving touch can be rare unless the person has regular visitors, family or otherwise, and even then, it depends it depends on if the relationship between the visitor and resident has been a touching one or not. Residents do get quite a bit of custodial touch when they are helped to dress, eat, bathe, etc. Don't discount this. It is better than none, but it doesn't have the power that loving touching does.

Sadly, it can even become rare in a home situation as well. A care partner may get so enmeshed and burdened with caregiving that they neglect to take time for gentle touching and hugging--or they may just not be a toucher. If this last fits you, it does not mean that you don't love the person in your care. It simply means that once you know the value of touching, you will need to be more conscious about doing it since it isn't second nature for you. The upside of this is that you get equal value from that touching!

Recent research supports the value of touching. Studies have shown that:

• Hugging induces a chemical that increases feelings of connectedness, trust and security and reduces stress. Physically, it lowers blood pressure. Wow! Hugging is strong medicine! But there's more. Hugging that is front to front puts gentle pressure on the sternum which activates a process that strengthens the immune system. We often hug from the side, but make an effort to be more frontal...it is just healthier!
• Even holding hands is healthy and the emotionally closer your hand-holder is to you, the more help you get. Holding hands with a stranger will lower a person's anxiety level. Holding hands with a spouse--or care partner--is even better. They have MRI brain images to prove this.
• Cuddling or snuggling may even improve communication. Its non-verbal messages are powerful ways to let a loved one know you care.
• Touch improves cooperation. People who are touched briefly on the arm or shoulder are more likely to comply with requests such as volunteering for charitable activities. A study in a home for the elderly showed that when service staff touched the patients while verbally encouraging them to eat, these patients consumed more calories and protein for up to five days after the touch. (When I read this, I immediately wondered if those poor patients didn't get touched again for those five days! Did you? Research can be oh, so helpful but it can also be cruel at times such as these.)
• People recover more quickly from social rejection when they are holding a teddy bear on their lap. Also, loved one who are given a stuffed toy or a doll tend to express fewer needy symptoms and be less clingy.

And so please wrap your arms around yourself and give yourself a hug! Then go give your loved one a hug and finally, go find someone else to hug as well.

Reference

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.